She’s not here to be your inspiration. She’s not going to let you use her wheelchair to define her. And she’s not going to be weird around you as long as you’re not weird around her.

If you ask her what it’s like to travel with a disability, she’ll tell you candidly about the highs and lows; the freedom of floating weightless in the Dead Sea and the torment of not hydrating while flying due to inaccessible plane bathrooms.

When people appear mystified that she can drive a vehicle, she smiles and shows them how she rolls in her adapted van.

If you talk about someone’s “special needs,” she’ll respond with a quick-witted quip like “I don’t know what your special need is, but mine is that I need you to feed me grapes and fan me all day.”

And when she sees discrimination or fear-mongering happening in society, she speaks up to put a stop to it.

THE MAKING OF AN ADVOCATE

Emily was born with Larsen syndrome, a genetic condition she shares with her mother that affects bone development throughout the body. From the moment she took her first steps until she was eight-years-old, she walked. With supportive leg braces and a walker, she moved along in her own slow, steady rhythm until the day she and her family realized walking would no longer be practical, or even safe, for her.

In the middle of third grade, she got her first wheelchair. Ever since, she’s been exploring what it is to live life on wheels.

Her first opportunity to share her perspective came at age 10 when she was invited to be on Sesame Street. At the time, there was almost no disability representation in the media, but Sesame Street had established itself as a mainstream television show known for making diversity and inclusion part of its educational repertoire.

The experience lit a spark for Emily.

“I am quite sure that I did not appreciate it as much I could have simply because I only had the awareness of a 10 year old,” Emily recalled. “But, it was really empowering to be a part of something bigger than myself, to realize that I had a voice that I could use to educate people and do it all while being myself.”

Those feelings have stayed with her ever since.

“I think I carry that with me because it showed me if I can do this at 10 years old on a national platform, then certainly I can do it as a career choice when I’m older,” she explained.

FINDING HER IDENTITY & HER VOICE

While in junior high and high school, Emily often worked to raise awareness about disability. She enrolled at Adelphi University to pursue an English degree, originally planning to become a teacher.

Looking back, she said she was always used to being the disabled person on campus.

“I went to a mainstream public school and I went to a college where I was really one of the only people with a visible, physical disability on campus. So I never even really thought about what it would be like to be surrounded by other people who were in similar situations as me,” she remembered.

She described college as an incredible experience, a place that was accessible and accommodating. It was really where she first came to recognize disability as part of her identity.

“I was an advocate, but not very vocal about my disability in terms of embracing it as part of my identity. But when I got to college, I really found myself gravitating towards this feeling that I wanted to devote my life to being an activist.”

Emily graduated with her English degree, ready to employ her writing and communications skills in a new career direction.

Today, she manages online presence and communications for multiple disability-related organizations and agencies, and she’s the Editor in Chief of the Rooted in Rights blog which focuses on amplifying authentic stories of disability rights issues.

Her contributions have been featured in AMI Accessible Media Inc., BBC Radio, BuzzFeed, The Daily Beast, Huffpost, NPR, Salon, The Establishment, SELF, The New York Times, US News, and the Washington Post.

Based on the success she’s already seeing, it’s clear she’s found her niche.

CREATING ACTION THROUGH CONVERSATION

When Emily applied to attend the No Barriers Summit New York City, we asked her to tell us about a time when she acted as a leader or a change-maker. The story she shared was from a very pivotal moment in her career.

In 2015, an advertising agency had created a campaign “Beware the Chair” to raise awareness around bone health and osteoporosis prevention. The PSA showed an empty wheelchair chasing people in a mall, accompanied by ominous music and alarming statistics.

Source: “Empty Wheelchair Chases People Around a Mall in One of the Meanest Ad Pranks Yet” | Adweek

As someone who developed osteoporosis and uses a wheelchair because of the disability she was born with, Emily recognized the importance of bone health. But she wasn’t comfortable with the dark tone of the campaign.

“The way we talk about disability and mobility equipment can make a huge difference in how people perceive the disability community,” she explained.

In response, she wrote an article for the Huffington Post entitled “Beware the Scare Tactics,” where she asked people to stop using negative portrayals of disability in advertising.

“The ridiculous prank of being chased by empty wheelchairs might be memorable,” she wrote, “but it does absolutely nothing to effectively educate the public. There are barely any facts included in the video, so it becomes all about the fear of wheelchairs, and on a larger scale, of disability.”

Within 24 hours, the ad agency chose to discontinue the PSA.

For Emily, she saw this as a positive example of how speaking up can change the way people see disability. Mobility equipment is a source of movement, not the enemy, and not a prop.

“When I believe in a cause and want to work toward bringing about change, I dive in with my whole heart and mind.” Emily

She doesn’t believe it’s always the burden of the disability community to educate other people, though.

“I want the world to be a place that is welcoming and accessible to me, but in order for that to happen, I think that it’s really a two-way street.”

Her goal is to be open and have a dialogue. “Letting others know what it’s like to navigate the world as someone who is disabled,” she explained, “that’s the best way to ensure that the world progresses toward being more accessible and inclusive.”

She’s discovered how to tap into her personal experiences and use them to build a bridge to better understanding.

“Even just going out and about, I’m subjected to stares and comments and questions, so I really try to write and speak in a way that makes it more like storytelling and more relatable. Because I think if we’re telling our stories, that’s really how we’ll resonate with people.”

Many of these stories are featured on Emily’s website, Words I Wheel By, a place she describes as her little space to share her passion for disability rights and social justice.

A NEW VENTURE: THE NO BARRIERS SUMMIT NYC

Emily’s excited to see the No Barriers Summit come to New York City. It’s the first time the event is being held in a major metropolitan area.

“It’s a great opportunity. New York City already has a huge population of people with disabilities and is already in so many ways a central hub for the disability community and for disability activism,” she noted.

She hopes the city will continue its efforts to keep up with the needs and ambitions of the vibrant disability community it houses and continue to welcome events like the No Barriers Summit.

She also hopes the Summit will inspire her to try new things and not be afraid to take risks.

“I’d like to be little more adventurous,” she shared. “Back in June, I went ziplining for the first time. I’ve decided I’d like to do some more cool adaptive things like that, things that make you feel more alive.”

She sees opportunities to take what she learns at the Summit and apply it to her professional life as well.

“My goal is to recognize my worth. And I know that doesn’t sound like the most risky thing, but I’m a young disabled female and speaking up for yourself when it comes to being paid what you’re worth and treated in a way that you should be treated is a scary thing sometimes.”

So far, she said her efforts have been paying off. But she knows she still has more to work on, like growing her self-confidence.

“It’s important to recognize that you have a right to take up space in this world,” she added.

Whether she’s speaking for herself or advocating for her community, she knows she’s not going to change the world overnight.

“I always say that if I change one mind, I’ve got something.”

And that’s the work of an activist, to keep moving the dialogue forward, raising awareness and creating a movement of positive change, one person at a time.